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How I Came off Dialysis - a Dialysis Patient's Experience

How I came off Dialysis or live without dialysis is a experience and one of the miracle stories of kidney failure of a chronic kidney patient on dialysis free living.  We will talk about many things including is it possible to stop dialysis naturally, can dialysis be stopped once started, when is it time to stop dialysis, regaining kidney function after dialysis and how many days can u skip dialysis.

My Kidney Failure Journey

Being On Dialysis For Almost Three Years and Then Coming Off WITHOUT A Kidney Transplant


June 17, 2017

stop dialysis: away to get out of bed taken off

TABLE OF CONTENTS


  1. IN THE BEGINNING        
  2. HOW IT ALL BEGAN        
  3. IN THE HOSPITAL        
  4. TREATMENT AND DIALYSIS        
  5. DIALYSIS & MY DOCS        
  6. DIALYSIS -- IN CLINIC        
  7. SECOND OPINION        
  8. DIALYSIS - PHASE II        
  9. THE PLAN        
  10. OFF OF DIALYSIS!        
  11. IN THE BEGINNING

IN THE BEGINNING

On February 17, 2014, I was sixty-nine years old, a 30 mile a week runner and had never set foot in a hospital as a patient in my entire life. I walked into the emergency room with what I thought was either a UI or another type of infection.

In forty-five minutes I found myself in ICU with a diagnosis of complete kidney failure.  I was placed on dialysis immediately and remained on dialysis for almost three years.  In late October of 2016, I completed my last dialysis treatment. 

I came off and did this WITHOUT a kidney transplant.  For a person who has been on dialysis for more than 90 days, that is virtually unheard of.  This is my story and my opinion of how, and perhaps why, I came off.

I am telling this story for several reasons.  First, so that others with serious medical conditions know that there is often a viable path to recovery -- but you must be the driver on that path and not just a passenger.  Also, that you work as a partner with your medical team and not just simply as a patient.  Second, to communicate the life events of the story, which are profound and finally, to seek the opinion of others who have had a similar experience to validate my theory of the medical reasons for this success.  As best I can tell, my belief of why this miracle recovery occurred has not been well documented in medicine.  Hopefully, one or all of these will interest you.

This narrative describes the journey -- human and medical.  You may skip parts of the story if you wish.

HOW IT ALL BEGAN

My journey began late in the morning on January 31st, 2014.  I live in a fairly large city in the south where we see snow maybe once or twice a year.  When it happens, it's like the world stops turning for us.  We were hit by a massive snowstorm which was not predicted.  It was quite unusual in both the amount of snow and how quickly it arrived. 

 It dumped almost three inches of snow on the roads in less than an hour and continued to worsen with each passing hour.  It was paralyzing.  I was about fifteen miles from home when it hit and was stuck along with thousands of others.  It was so bad that people were abandoning their cars and walking on the side of the road -- and moving faster than me.  

three inches of snow on the roads


I managed to travel in my four wheel drive Jeep about three miles toward my house. That three miles took almost seven hours and then I hit all stop.  From there, I sat on the road for almost three more hours.  Finally, the police walked by knocking on windows telling everyone to prepare to stay for the night.  They said the road was closed ahead and would not reopen until at least the next morning -- maybe longer.  

As I mentioned, I was sixty-nine, a runner and had been a runner for over 30 years.  It was about eighteen degrees outside, and I only had on a tracksuit and old running shoes. No jackets and no gloves.  I had absolutely nothing that would help me in this freezing, snowy weather.  I was not threatened by that knock on my window -- at all.  I decided immediately that I would just get out and walk the remaining twelve miles home.  

That was one hell of a mistake.  I started at about 5 PM and finally made it home about 11 PM that night.  While I was walking in the dark I was unable to see the ground and I hit black ice at least ten or more times.  Each time my feet would fly up, I would go parallel to the ground and then gravity would take over immediately.  BAM!  I would drop three or four feet right on my back.  It was a mess. Over and over again.

The next morning I had a massive case of no energy.  I am a person who is usually up by 5 AM or so to get ready for the day.  I could not get out of bed.  My thought was I had caught a bug and would just need to let it run its course. The problem went on for almost two weeks during which time I threw up on a regular basis.  

I finally decided this was not going away on its own and went to my family doctor.   It was late in the day when I saw the doc.  He thought it might be an infection.  He drew labs and sent me home with an antibiotic and something to help me sleep.  


The first thing the next morning I was awakened by a call from my doctor.  He had the lab results.  Now, this was from the doctor and not his staff or nurse.  He told me to go to the nearest ER immediately.  I asked why, but he would not tell me other than that I needed to be seen in the ER immediately.

IN THE HOSPITAL

I made the trip as ordered.  It took the ER staff about 30 minutes to confirm I was in complete kidney failure and had been for at least two weeks.  If you know anything about labs you know that creatinine and BUN are two critical measurements for kidney function.  Normal creatinine for a male is about 1 and BUN is in the 15 or so range.  

My creatinine was 23 and my BUN was 180. My GFR was 2.  A simple definition of GFR is that it is an expression of the percent of kidney function.  Most people with normal kidney function my age have a reading of at least 60 to 75.  I had no prior history of kidney problems -- ever. I probably should have been dead.  Most people cannot survive without their kidneys working for more than a week to ten days.  My kidneys had not worked for two weeks!  I had no clue other than the symptoms I described.  Frankly, I did not feel dead -- just sick.  

Mantle Cell Lymphoma and Chronic Kidney disease


While on the ER table the docs brought in a surgeon who inserted a catheter in my neck that ran through an artery toward my heart.  I was fully awake while all this happened.  As I mentioned, I was a fitness buff.  It never even occurred to me why the doctor was putting this tube in my neck, although I'm sure the staff told me.  Within 15 minutes I was in ICU.  They rolled a big machine into my room.  This machine was almost the size of a refrigerator and the nurse connected me to the machine with the tubes that the doctor had just placed in my neck thirty minutes ago.  "What in the heck is this," I asked?  "It is a dialysis machine," I was told.  Oh my, I thought.  This must be a dream!

Well, unfortunately I was not a dreaming!  I was seen by a nephrologist the next morning.  He explained it all, but I still didn't get it -- at least not fully.  Over the next few days, he ran more test and he was concerned about my blood work.  He suggested that I see a hematologist.  So, the next day I was rolled down to the hematologist.  

The hematologist did a bone marrow biopsy which was pulled from my hip bone.  He said we are doing this just as a precaution and that he would send it to a pathologist to be sure there was not another problem.  "What kind of other problem?," I asked!  "Cancer," he said.  Oh my, this is not going well -- at all.

Well, the results came back in about three days.  By this time I had been moved out of ICU.  My hematologist came into my room early one morning and said they had the results back from the biopsy.  The news was not good.  I had a very rare form of lymphoma called Mantle Cell Lymphoma.  

Well, that's just dandy!  This could not be true and even if it was my thought was it would go away on its own.  Talk about denial!  So, I said to him, "I'm not sure I want your chemotherapy treatment ."  "What if I just decide not to be treated?"  He didn't blink an eye, and he said: "you will probably be dead by Christmas."  This was in February.  Uh-oh!  Maybe I better take that treatment.

In the meantime, the nephrologist was not sure why I was in kidney failure and suggested a kidney biopsy.  Biopsies are not fun, but a kidney biopsy is not only not fun, but it can be dangerous.  Based on all of the other problems I decided to go for it.  We needed to know.  The results were sent to a pathologist, and within two days, the problem was nailed.  

I had some degeneration of my kidney tubules that could have been caused by the trauma of falling, but more importantly, the lymphoma had moved into my kidneys.  Kidney involvement is quite a rare form of involvement for this type of lymphoma.  In fact, there are only a few cases in the world.  So, there you go.  We knew the root cause of these problems. 

Actually, this was one of many miracles along my journey.  Had it not been for the kidney failure the cancer may not have been found until it was much further along and more difficult to treat!  Thank you modern medicine!  And, thank you to some very smart, dedicated doctors!  I had some of the best.

TREATMENT AND DIALYSIS

I began chemotherapy while in the hospital and was dialyzed about every other day.  The chemotherapy was a monthly infusion treatment and lasted for six months.  I remained in the hospital for about six weeks with a kidney diagnosis of Acute Kidney Failure (AKF).  I was there, according to my doctor, for that six weeks in the hope that my kidneys would begin working again.  That did not happen.  After six weeks my diagnosis was changed to End Stage Renal Failure (ESRD).  I was sent home from the hospital to continue dialysis in a clinic not far from my home. 

TREATMENT AND DIALYSIS

DIALYSIS & MY DOCS

I will not delve into the life changes and issues that surround both dialysis and chemotherapy at the same time.  Anyone who has done one or the other knows the devastating impact that either one of these events can have on your life.  Either is quite dramatic. Both at the same time is just what you would expect -- overwhelming and a formidable life-changing event.

By the way, let me further expand on my purpose for telling this story as mentioned earlier.  First, serious medical conditions can be quite devastating.  But if you are someone committed to not letting it rule your life, it can usually be dealt with.  Two, while the medical community is truly amazing (for most of us), they do not have all the answers.  

We have a responsibility to read, study and learn all that we can about our disease or condition.  In fact, if you want to change the outcome, you had better take this approach!  Part of that process is to also be sure you have the best medical experts you feel that you need.  

Second opinions are also critical.  If you are not comfortable with the ability of your medical team then you better change -- and fast.  I was very lucky.  I had great doctors, but I still sought second opinions from experts in the field.  My condition, in some respects, was very rare and not something my doctors dealt with every day.  

No need to dialysis and transplants


Also, let me say that God had a big hand in all of this.  I am not an overly spiritual person.  I don’t wear my religion on my sleeve.  I am a Christian and believe strongly in a God in heaven that created the universe and all that is in it and that He watches over us.  

I was in a Catholic hospital and at least once a day there was a doctor (yes, a doctor) who would offer to pray with me and for me as he made his rounds.  He would always ask permission and he did not push religion.  He was a doctor — not a preacher.  He knew, though, that prayer worked -- and so did I.  He prayed for me and with me often.  Heaven knows at this point I sure needed it.

DIALYSIS -- IN CLINIC

Now, let's turn to my life on dialysis in the clinic.  After I began dialysis in the clinic it became a three-day a week exercise that required four hours at each visit.  The setting for dialysis is technology and medicine at the top of its game.  A dialysis clinic is also a very profound and stark setting.  If you have not had the experience,  let me describe it.  

You walk into a large room full of other kidney patients, anywhere from twenty to forty, who are sitting in what you might call fancy recliners.  A technician connects you to the machine through some form of dialysis access that pulls the blood out of you and into the machine.  Once in the machine, the toxins in your blood are removed and then the cleansed blood is put back into you.  It is painless.  It does the job your kidneys should do, but aren't.  This is done to keep you alive.

It became pretty clear to me that I could spend the rest of my life doing this and found the prospects of that idea unacceptable.  I began researching the issue and found there was a way this treatment could be done from home.  In fact, there are two types of home dialysis -- hemodialysis (HD) and peritoneal dialysis (PD).  You can Google the terms if you want a description of each.  

They both do the same thing, but do it quite differently. You must be trained to treat yourself, but it gives you much greater flexibility and freedom.  In the end, I chose PD home treatment because it did not involve needles and blood and because it was a treatment that was closer to what my own kidneys might do, but certainly not the same. And, it might even improve what kidney function I had left (called residual kidney function).

stopping dialysis treatment


You will notice the discussion here does not mention a kidney transplant.  That was not a consideration for a couple of reasons.  First, transplant centers require a long waiting period for cancer patients before they will even consider you for a transplant.  Even for someone who is otherwise healthy and who does not have a live donor the wait can be years or even decades.  

Some transplant centers will just dismiss a potential transplant out of hand if the patient has had cancer.  They just will not do it.  Second, I was not really interested in a transplant.  While there are many successful kidney transplants each year, the procedure does not come without some risk and side effects.  The side effects are a life of immunosuppressant drugs that can also lead to other medical problems.  Plus, transplants are not permanent.  Most will fail at some point in the future.  In the end, a transplant was just not an option for me.

SECOND OPINION

I went for a second opinion for my kidney problem and after extensive testing it was confirmed that my diagnosis and treatment was correct.  One thing the second opinion told me, as a result of an ultrasound, was that my kidneys had already begun to atrophy due no use.  To me, this was profound!  This was six months after I started dialysis and that fact hit me like a ton of bricks.  

As a runner, I knew that missing a few days of running caused my muscles to atrophy somewhat and it required a rebuilding process to get back to my regular running muscle strength.  That's human physiology.  I began to relate that concept to my kidneys.  I knew if that atrophy trend continued, I would never, ever stop dialysis.  My kidneys would become shriveled up like raisins and that would be that.  Keep that thought in mind. 

Stop Dialysis: Deciding the choice


For me, that concept drove me to make many important decisions!  Most of those were my decisions and not all of them were suggested or supported by my medical team.  Many were, though. I don’t mean to demean medicine.  In fact, I’m in awe of modern medicine.  I know, I’ve seen plenty of it.  I only want to make the point that as a patient I know it is my responsibility to help solve this problem along with my medical team.

DIALYSIS - PHASE II

After eighteen months of being treated in the clinic, I made the move to home dialysis.  Again, for the sake of time and words, I will not describe the surgeries required for dialysis preparation and learning the new self treatment system.  It was all part of the process of home treatment.  In the end it worked well.  I had much more flexibility and the treatments were easier than treatments in a public clinic.  It was a great improvement!

At this point let me explain how I began to focus on getting myself off of dialysis.  I clearly understand this may not work for everyone.  We are all individuals and what works for one may not work for another for many reasons. I also am a firm believer there is not a “one size fits all” approach to medical treatments.  

Additionally, while there may be non-medical approaches to treatment I absolutely do not support any of these without the full support and blessing of my medical team.  Finally, I don’t advocate that anyone take this on without their own research and without input from their medical team.  Don’t do it.

After starting PD treatment, which is different than HD treatment, my residual kidney function began to slowly improve. Not dramatically, but slowly over many months.  This form of treatment is closer to how your body works and is more friendly to sick kidneys.  By the way, the kidneys, like most bodily organs, do not regenerate themselves.  So, the healing process, if there is any, must occur in some unique way.

when is it time to stop dialysis


There were two key core elements that I focused on.  First, it was my belief that my kidneys needed exercise in order to begin to work better.  Remember my earlier comment about atrophy?  This is where that concept came into play. I began to reduce my dialysis treatment (more on that later).  Now, it is a real balancing act to achieve this.  

If your sick kidneys are overwhelmed and taxed too much by an increased demand to clear toxins they may just crash and stop working all together.  So, it must be done with great caution and care.  You must get feedback from frequent labs to know where you stand.  It is critical for you to know how your body is reacting before you might make the situation worse.  I had a very smart kidney nurse and she believed in my “if you don’t use it -- you lose it” concept to a point.  

My doctor did not seem to think it was important.  His view was that the kidneys can’t fix themselves and there is no medicine that will cause them to work again.  It is my opinion that most doctors believe this and would agree with my doctor.  Well, I don’t believe it.  At least for my type of kidney failure.  Now, there are many causes for kidney failure.  Some are chronic conditions caused by disease and this concept will probably not work for them -- at least as long as the disease is present and maybe never.

THE PLAN

Here are the details of how I came off of dialysis. There were three basic legs to my recovery: 1) a slow and cautious reduction in treatment (instigated by me), 2) diet and 3) exercise. There were also a few extra tweaks added by my doctor described below that also helped.  Before we jump to the specifics, let me mention that I learned along the way of a relatively new and somewhat controversial concept called, “intermittent dialysis.”  

The best description of the treatment is that it means you are treated when you need it and not on a preset, fixed schedule.  There are many scientific studies on the topic but, for the most part, I don’t believe most nephrologist support this type of treatment.  Well, unbeknownst to me, that is what I was doing (intermittent dialysis) and it sure worked for me.

regaining kidney function after dialysis


First, let’s talk about my reduction in treatment.  Within a couple of months of going on PD I began to slowly reduce my dialysis treatment.  That is, the period of time and amount of the volume that is used to remove the toxins.  For those who understand PD, this was the amount of “fill” volume and the “dwell” period.  I did this gradually, on my own and would always do this within a few days of having labs drawn.  That way if it was creating another medical problem, I would know without delay.  

What happened each time was that my kidney function would slightly improve or certainly not show any decline.  I did this slowly over a period of a year and each step was small.  At the same time my doctor began to make other medical suggestions to improve my kidney function.  

He recommended sodium bicarbonate that has been proven to help sick kidneys by keeping the body pH in a less acidic range.  He also recommended an ACE Inhibitor (lisinopril), which he believed would help.  It turns out that both did help.

Diet control for kidney patients

Second, let’s discuss diet.  As a kidney patient, your diet is critical.  Your kidneys perform many functions other than clearing out toxins.  If they are not working properly your body chemistry can go haywire -- and fast.  This can lead to other very serious medical problems, if not caught early and if not treated.  So, diet control for kidney patients is a critical part of treatment.  

Dieticians are an important part of your medical team.  I went another step and began my own research on diet.  I listened to the dieticians at my clinic, but I also did my own research.  I found that animal protein and processed foods are not good for sick kidneys.  

Protein is a double edge sword, though.  Most kidney patients lose protein in their urine or in dialysis (or both).  So, adequate protein intake is very important.  I also learned that your protein should be plant based protein -- not animal based and certainly not red meat.  All of this was to reduce stress (work) on sick kidneys.  

Now for someone with normal kidneys, it is probably not such a big deal.  Actually, for someone who is in complete kidney failure or if their kidneys do not operate at all (no residual function) it probably does not matter.  But if you have sick kidneys and residual function and you want to keep or improve it, it does matter!  By the way, from a medical point of view, even if you are own dialysis, you want to retain as much residual kidney function as possible.  It makes a significant difference in your dialysis treatment and in your overall health. 

You also want to be sure you don’t eat any more protein than is absolutely necessary. The amount of protein you need is based on your body mass and the formulas are readily available on the internet. The protein target level necessary is different for each person, but if you adhere to your target your labs will tell you if there is a problem.  As a kidney patient, do not flood your system with unnecessary protein.

In order to do this, it almost means you should become a vegan.  That’s exactly what I did.  I occasionally eat chicken, but primarily vegetables and fruits.  I did one other thing.  Again, this was not recommended by my medical team, but my research indicated it might help my sick kidneys.  I went on a 1,000 calorie a day diet.  

How I Came off Dialysis - a Dialysis Patient's Experience


That just means less burden on my sick kidneys and my body seemed to adjust to the restriction just fine.  In fact, there is medical research supporting calorie restriction — even for those without kidney problems. By the way, both of these diet conditions may impact your nutritional content intake as well.  That is, what your body needs to work.  So, my doctor suggested several supplements, as determined by my lab reports, to offset that problem.

Third, let's address exercise.  I was a runner before dialysis but found it almost impossible to continue after starting dialysis.  My body just did not have the same energy level as before.  I believe that is part of the body chemistry change that sick kidneys can cause along with the impact of chemotherapy and perhaps even my type of lymphoma.  

I could, however, walk.  And that is what I did.  I began with short walks of one-half mile and slowly built up to three to five miles a day.  I did this every day unless it was raining and cold (wimp).  I ultimately began to mix in running with walking but my body still could not get back to where it was previously.  I'm satisfied with the current level of exercise and my research indicates it makes a big difference in your health.  I have also added light weight training with gym visits three days a week.   My doctor believes my exercise plan was a major contributor to my improvement.  I will not disagree.

For those who understand kidney function and watch their lab reports.  I am still considered to be in stage IV kidney failure.  My creatinine is about 3.5 (normal is 1) and my BUN is in the 50 range (normal 7 to 20).  My eGFR is 17, which means my kidneys function at 17% of normal adult kidneys.  That sounds bad, but it is better than most people get with dialysis and, frankly, is adequate.  I have a few side effects and take a few more meds than someone without a kidney problem, but I feel great and -- I am NOT on dialysis!

Finally, you should not try what I have described here without doing your own research.  Come to your own conclusion based on that research and in discussions with your medical team.

OFF OF DIALYSIS!

In October of 2016, after much cajoling, I was able to convince my doctor that I should come off of dialysis.  By this time my treatment was so low that it made up less than 5% of my clearance.  Clearance is the medical terminology that describes the amount of toxins removed from your system. 

can dialysis be temporary
 

The argument I made to my doctor was, why am I on dialysis if over 95% of my kidney function is from my own kidneys and not dialysis?  He finally agreed to a trial of no dialysis for two weeks.  In that two weeks my kidney function actually improved slightly.

So, there you go!  That is how it was accomplished.  My doctor is a very smart doctor.  What I did was outside the envelope but with much caution he allowed me to proceed.  It worked.  Today he says he can’t explain why I came off after such an extended period.  He said he has never had a patient that came off after that length of time.  

I’m sure medical science does not explain it, but I firmly believe that my actions greatly contributed to this amazing and rare outcome.  Through my own extensive research and study, the help of a great medical team and the good Lord up above, it worked and I will be forever grateful!

@This was published in a Facebook group and copied to this website. We do not own any right to this information. Copyright free Images are used in this article. This is not a medical advise.